Saturday April 5th, 2008. www.qfad.org
Kayla had a wonderful day today. A group of ladies came over from Queen For A Day organization. This is a national organization to build the esteem of little girls and they also have something similar for boys. These wonderful people came over and set up arts and crafts for Kayla and Hannah. They also did nails, and makeup. Both children were given feather boas, a beautiful tiara and a wand. How could you not love getting pampered for hours along with several gifts. This was really great! We met Hannah when Kayla was first diagnosed and she has been a source inspiration because she is always running around the hospital laughing. She makes going through chemo look like it is easy.
Later some friends came over with their four kids and the house was crazy for hours. At one point Kayla was bouncing up and down on a chair saying “I am having so much fun!” It was almost like the old days where we had lots of activity happening.
Sunday 6 April 2008.
Friends came over to play with Kayla and she was busy all day. I have to tell you that visitors are so crucial to us! It makes us feel as if we are part of a normal life. It is like a gift when friends come over to visit. Most people do not realize how consuming cancer actually is. Most days Kayla and I are at the clinic getting chemo or we are at home, with very few options for entertainment. Tomorrow Kayla has to get bone scans, a bone marrow aspiration and x-rays, such a bummer. This is the other reason why visitors are so important, they take our attention off of crappy things!
Monday April 7th, 2008.
Our day started around 5:30 am to get ready for our trip to the clinic and hospital. Because Kayla cannot eat anything until after her procedures, I pack lots of food that she can eat as soon as she wakes up. One of the procedures is a bone marrow. Those make Kayla very sore for days. No matter what the results are of the marrow, her treatment plan does not change at all. Which is why I wonder why she has to get so many. Do you have any idea how huge the needle is? Did you know that they have to push the needle into and through hip bone to get the marrow? It sounds so simple but is actually quite painful. We got back home at 5:00 pm. It was a 12 hour day from start to finish. Kayla weights 60 pounds.
At the clinic one of the mom’s came up to me and told me that lumps showed up in her daughters throat. The mom tried to act normal but you could tell the anxiety level was out the roof. I could feel the worry she was going through waiting to hear the results of tests. Those kinds of wait periods are interminable.
Wednesday April 9th, 2008.
It was a relief to go to the dentist and get a bad tooth fixed. It has been bothering me for a while. The only reason I went is because it was getting bad. Otherwise I would have put it off.
The physical therapist came today and he was very impressed with Kayla’s improvement. He showed us a new round of exercises for Kayla’s legs. We have two months before we start the rough cycle of chemo. This feels like I have a window of time to help Kayla rebuild bone density and overall strength. Right now Kayla is only on three different chemo’s, Intrathecal methotrexate (in the spinal fluid), Peg Asparaginase (leg shots) and IV Vincristine. This is a relatively minor amount compared to the rough chemo, which has eight different chemotherapy drugs.
We watched on TV a guy by the name of Randy Pausch, a professor at a University who has Pancreatic Cancer. He is such an inspiration this guy – going out and telling people to follow their dreams while he is dying of cancer. I am going to buy his book.
The next goal with Kayla is to bring her joy as much as possible by doing arts & crafts, cooking, etc. Today we pressed some flowers and she loved it.
Thursday April 10th, 2008.
The cartoon channel is completely insane and Kayla has started to become a monster from watching it. She has been rude, and insolent, until I snapped and told her no more TV. Man she got so upset and cried in her room for a long time. After dinner our sweet girl came back, we hung out together and then Kayla went to bed for the night.